July 2009 rads group

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  • DUTCHinAtlanta
    DUTCHinAtlanta Member Posts: 58
    edited July 2009

    5timewinner - Annabelle's Radiation Onc recommended Fruit of the Earth brand Aloe Vera 100% Gel.  It's available at WalMart.

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited July 2009

    Oh my. Fatigue is what they said would come and BOY has it come. I slept over 10 hours last night but I'm still exhausted.

    Skin is still good - barely pink on my sternum, the rest normal. It's a good thing because I'm too tired to deal with anyting else.

    Have a good weekend everyone. 

    Leah

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  • hrf
    hrf Member Posts: 3,225
    edited July 2009

    I've had 13 tx so far ...... this morning will be 14. I find that I nap in the afternoon and still need a long night's sleep. After today, I will have 11 more to go. Good luck everyone and hope today goes well.

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  • Irishred
    Irishred Member Posts: 136
    edited July 2009

    My first rad was yeterday, they gave me a sample of something new  Miaderm,  it has a great smell and silky feel when you apply it.  They said Publix or other pharmacies can order it for you, or you can call 1-877-642-7737 and put it on credit or debit card.  The price is 23.95 for 4 ounces.  I am still considering ordering this cause it seems great, but seems quite expensive also.  When I had my first rad, the only horrible thing was laying on that hard metal table for 40 minutes in the same position.  I still dont know when I was getting rads or they were taking pictures.  The only other thing i didnt like was the two lab techs spent 5 minutes arguing about who drew the purple line or the blue line first, which is immaterial today since i sweated most of it off while working yesterday. lol.  Oh I have samles of the Aquaphor, sure seemed very greasy to me.  Reminded me of diaper rash cream.Hey does anyone know if the blue marker that gets all over your clothes come out in the wash???  Good luck all.

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  • kim40
    kim40 Member Posts: 904
    edited July 2009

    Today is my 10th rad - after today 6 left to go - YAHOO

    Cathey

    Simulation was a piece of cake.  You are lying on the table for a few minutes while they give you the tattoos and draw on your chest for their template. I believe that it only took about 30 minutes to do - if that.  I had a CT scan first though - I believe this is standard protocol.  How many rads will you be doing?  Tell them about your chest if you have some concerns.  They may decide to delay radiation if you are still healing - I'm not sure.  But do bring it up.

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  • MsDebS
    MsDebS Member Posts: 36
    edited July 2009

    TGIF....just finished #10.  I am a little sore inside...kind of like burning twinges ( does that make any sense?)  I too am using the 100% aloe from Fruit of the Earth.  I like it alot.  If you keep it in the refrigerator it is especially nice. Have a wonderful weekend all!

    Deb

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  • nwood450
    nwood450 Member Posts: 110
    edited July 2009

    Hi all ... Just had #17.  Wow!  Hard to believe.  My breast is getting pinker and the breakdown in the crease is uncomfortable but tolerable.  I ditched the bra and have been wearing the shelf cami.  What a difference.  Fatigue is very much a part of my day.  I try to get everything done in the morning so that afternoons are made for napping!  I go back to work on August 3rd.  Treatments will be finished by August 10th.  Starting back half days to get my sea legs. 

    Looking ahead to "the end" of treatments is both a blessing and scary.  One thing has been gnawing at me.  When I was first diagnosed I had my biopsy locally and then went to Boston for treatment.  Locally they had suggested bone scans, etc to check for mets.  In Boston they said unnecessary.  I've spoken with so many other women and they have all had this mets workup.  Now I am worried.  Can't help thinking "WHAT IF???"  Anyone else in the same boat?

    Thanks girls ... have a nice weekend!

    Nancy

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  • hrf
    hrf Member Posts: 3,225
    edited July 2009

    My doctor has said no need to check for mets. She said that if something is wrong I'll know. Has anyone else had that response?

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  • jdeking
    jdeking Member Posts: 408
    edited July 2009

    My doc said the same thing hrf. I don't really like that answer, but what can you do?



    14 of 33 done. My breast and underarm area are pink pink pink, and I have developed a rash on the inside area of my breast, extending to the clavicle. More annoying and itchy than anything. I told my techs who helpfully said "don't scratch". I had to push to get them to give me creams for itching! Aloe vera is not doing much and I don't care for the Aquafor. The rad nurse gave me a sample with Lidocaine, so we'll see if that helps.



    Nadine - good luck with your lump, I hope it is truly an 'easy fix'!



    I still haven't had fatigue but have noticed that I am sleeping less and less. I tend to wake up 1-2 hours after I fall asleep, then struggle to sleep for the rest of the night. I am surprised I am not more tired!



    Have a wonderful weekend everyone!

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  • dkhancock1948
    dkhancock1948 Member Posts: 433
    edited July 2009

    I had some great news today.  I knew I had 28 reg. rads, but was under the impression I would have 5 boosts at the end.  I found out today I will not be having the boosts since they used the bolus everyday on me.  I only have 1 more week. YEA!!!!!!  Today was my 23rd out of 28!  I am so happy!

    CONGRATULATIONS to all those who finished today or this week.

    5timewinner:  My radiology dept. gave me Aquaphor to use in the beginng.  After I was more pinkish/redish and had different areas of rash, they gave me RadiaPlex Gel and told me to stop using Aquaphor.  I am also using 99% Aloe Vera (purchased at a health food store).  On the weekends I use the Essential Oil of Lavendar.  Right now, none of what I am using is completely easing the color or the tenderness of some areas.  I have also read on these threads where some use calendula cream purchased in the baby section at Target.  I am planning on going to Target and Walmart to try to get that and the Fruit of the Earth brand Aloe Vera.  I don't know how your skin is supposed to look since I only have mine to look at, but my techs tell me mine doesn't look bad.  (I guess it is the matter of perspective. LOL).

    Hope everyones's weekend is good and relaxing.  Debbie

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  • carollynn79
    carollynn79 Member Posts: 654
    edited July 2009

    MsDebS I finished # 10 today also, tired about 2 hours after and am tender sore under my arm and along the inside, not too bad just put a soft cloth under my arm and use the Fruit of the Earth. 

    Jdeking  Ask about cortisone cream, we can use 1% I use generic brand with aloe in it and it helps with my itch around my incision, I think there is some with lidocane in it too.

    Has anyone found natural aloe with lidocain.

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  • goldenlover
    goldenlover Member Posts: 6
    edited July 2009

    I am over the hump now with 18 down and 15 to go. My skin is red but the only painful spot is under my arm. I have had a crazy week though. Last Saturday I felt a little out of it. I went outside to put some stuff away and was walking next to the pool. The next thing I was in the pool but didn't remember falling. Since the solar cover was on, I had to yell for my husband to come help me out. Monday I discovered that I had walked through the entire neighborhood with one orange shoe and one blue shoe. I also seem to have bouts of fuzzy headed feelings where I lose my train of thought. My radiation oncologist said it wasn't from the radiation and told me to talk to my regular Dr. She thinks it is from the radiation but still ordered complete bloodwork and a head CT which all came back normal. Has anyone else had these fuzzy type feelings? If so, it would be nice if the radiation people would admit that it could be from radiation which would eliminate the need for all of these extra tests. I really thought that since I am keeping active that I wouldn't have much trouble with side effects, I guess I was wrong.

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  • nwood450
    nwood450 Member Posts: 110
    edited July 2009

    Goldenlover ... that sounds really frightening.  Thank goodness your husband was nearby.  Sometimes I have lapses in my train of thought, but nothing like you experienced.  Hope the doctors get to the bottom of it.  We have so much to contend with .... and I do believe, that inspite of what the radiation techs/nurses/docs say, we do experience a myriad of SE that are unexplainable but very real since rads. Good luck to you.

    Nancy

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  • LoriL
    LoriL Member Posts: 185
    edited July 2009

    Goldenlover, I've had a LOT of "fuzzy type feelings" like you have described. I frequently lose my train of thought, get distracted easily, etc. I have perennial gardens, which I have had for years and know all of the names of the plants like the names of my friends. Well, lately when anyone asks me, "what kind of plant is that?" I don't have a clue! I'm having trouble recalling other words, too, and people as well. I also have had a lowgrade headache for the past several days. That might be from drinking more coffee, though.

    I know that stress in general can cause some of these symptoms, so I haven't mentioned it to my radiation oncologist. But, it has gotten so bad in the last 2 days that I'm thinking I should say something when I see him next Wed. I've been joking with friends/family that I think they have been radiating my brain instead of my chest! But now I'm starting to have this fear that there might be brain mets or something like that. I'm node negative and bone scan, chest/abd/pelvis CT's were all negative. But, still I worry! Maybe it's the radiation? Maybe stress? I honestly don't feel like I'm stressed out. And, I can't blame it on chemo as I never had that! Anybody else have any insight? 

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited July 2009

    I have very slight dizziness every once in a while, but I'm not sure if it's the rads. I have a normally very low blood pressure, so every once in a while I get that. It's happening more now, but that could be stress or just the long daily commute.

    Or it could be the rads.

    Started with the bolus today. The tech told me it's made of silicon, and they cover it with paper (I gues for hygienic reasons since they don't have individual boluses). I'm putting on the aloe vera more often from now on in hopes of keeping the burning to a minimum.

    LoriL, I also have the memory thing, though I know it's left over from the chemo. Um, I had an idea for how to deal with it but I forgot it.

    Leah

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  • nasharayne
    nasharayne Member Posts: 139
    edited July 2009

    Hello all,

     I started rads last Wednesday.  I will be getting 28 tx + 5 boosts.  Okay, I'm going to try to catch up on these posts.

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited July 2009

    nasharayne, hope all goes well with your treatments.

    Leah

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  • josirus
    josirus Member Posts: 67
    edited July 2009

    Hi everyone. I just started radiation on Thursday and have had 3 treatments. Only 27 left (including 5 boosts)! I am trying to catch up in this thread, but have been more active in the tissue expander thread because I am being radiated with one in place.

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  • nwood450
    nwood450 Member Posts: 110
    edited July 2009

    Hi ladies ...

    Rads machine was down at my facility.  After waiting for 1 1/2 hours, they sent me home and told me to be "on call" for the day.  Hopefully it will be fixed by this afternoon.  If not, they will tack on the treatment at the end I guess.  I live very close by so travel is not an issue.  It seemed like a pretty serious issue.  They were calling in a physicist from Boston.  What happens if it's down for a few days?  I wonder how this will effect treatment if that's the case???

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  • charmd
    charmd Member Posts: 118
    edited July 2009

    Hi Cathey,

    I had my simulation a week ago and it wasn't too bad.  I had my bilat MX on June 19th, with a followup on June 26th. My arms were a little sore towards the end of the process, but ok afterwards. For the next couple of days, I would have pain on my left side where the lymph nodes were involved  with surgery, but it was nothing really bad.  My tech advised me to take either ibuprofen or tylenol about 20 min before each treatment to help with the muscle pain if needed.  I start rads tomorrow so I'll see how it goes.  Best wishes to you.

    Charmaine 

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited July 2009

    Oh, nwood, what a bummer!

    I'm just a bit more than halfway through. So far skin is good, just a tiny bit pink on my sternum.It would be nice if it stays that way but I don't hold out too much hope since I now get a bolus with every treatment. Yesterday I wasn't in my regular treatment room because of a long line (berlieve me I appreciate the shorter wait!) and the bolus they used was covered with paper. Today (back in regular room) it wasn't covered so they just moved the sheet that covers my right side to cover my whole chest and put the bolus on that.

    Now, here's an interesting thing that happened recently.Here in Israel, cancer patientss in active treatment get full disability payments, so I've been receiving it since January. At the time it was approved, the letter I got said I would be eligible until the end of Sept. 2009, and that my eligibility would be reevaluated then. So I got a letter saying I had to go before a medical committee and I was given an apointment in June. Well, I'm not stupid, I  wore a scarf and NO makeup (at a time I still didn't have eyebrows or eyelashes) which is something I usually do not do. The meeting was only a few minutes, with a doctor asking questions about how I felt, where I was in treatment, etc. The whole "committee" consisted of the doctor and a clerk taking notes. I recently received a letter saying my disability had now been approved until August 2010!

    What I learned from this: I look like @#%@# without makeup, especially without eyebrows and eyelashes.

    Leah

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  • Dawnmrn1
    Dawnmrn1 Member Posts: 446
    edited July 2009

    Hi All!  I know a bunch of you from the March Chemo thread.  I stared my 33 Tx last Tues, so 28 left, I get a bolus everyother day with the gel pad. It is nothing compared to chemo, no SE yet and so far skin is holding up. 100% aloe is in the frig!I am meeting with a nutritionist to get rid of this 15 lbs of blubber, I have accumulated during chemo. I am walking every night, but find I get tired easy!!! Good Luck to all! Dawn

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  • NanaA
    NanaA Member Posts: 293
    edited July 2009

    Went today for my first rad tx.  It went fine. Would have been out in 15 minutes if they had not said the nurse practicinor (Sp) wanted to see me.  She informed me that a spot had showed on my lung on the CT scan they did to set up my rads.  This CT was done 4 weeks ago.  How come no  one told me sooner.  They made an appointment with a pulmonary specialist for August 17.  I was not willing to wait that long so I call pulmonary office myself and they had a cancellation on Aug 4, so I am going in then to see him.  The NP said he will probably order another more detailed CT.  When I look up spots on the lung ( mine is 8mm) about 50% are other things beside  cancer.  Some can have been there for years.  I will just have to wait and see.  You would have thought that 9 weeks of chemo would have done something to this if it was cancer.  I see reg, onc tomorrow when I go to have herceptin.  I will ask what he thinks.  I am so tired of not feeling good and hurting all the time.  Since I finished with taxol and am just doing the herceptin, my arms, legs, and joints hurt.  My knees especially but also hips alot.  My reg doc does not want me taking any asprin or advil because I had an ulcer caused by aleve a couple years ago.  My onc does not want me taking anything with tylenol because that affects the liver which is what processes the chemo and herceptin.  He gave me a prescription for oxycodone but it makes me sleepy and still does not get rid of pain.  It does take edge off so I can sleep at night.  I can't make anyone happy.  Especially not me.  I have had enough bad reactions to medicine that I try not to take anything unless i have to.  That means I am usually really hurting by the time I take something.  I have bad headaches as the SE to the binders in several medicines.  If it is something that can be taken in a capsule I am fine.   I buy tylenol in the capsules instead of caplets or tablets.   I am going to talk to onc tomorrow to see if we can come up with something I can take without being sleepy but still not hurting.  I hope everyone is doing OK with their rads.  The NP seemed to think since I tan well that I should not have too much of a problem with the rads.  She said fair skin usually has more of the problems.  I grew up in Phoenix and was tan all the time groowing  up.  If I would spend any time outside I would tan agin.  Since my knees hurt so much I have not spent too much time in sun this summer.    Hugs to everyone. Annette

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  • Concierge5
    Concierge5 Member Posts: 3
    edited July 2009

      Hi Everyone,

      I just had my 6th treatment today and so far so good...I'm a little scared to hear about the soreness/redness from the treatment, but I'm sooo glad that I found this site. I have been getting great advice on what I can use.

     I'm also getting a little scared to hear about the fuzzy head... I have to catch a plane to Oahu because we dont have a treatment area on Kauai. So I fly out in the morning and fly home in the afternoon. 5 days a week... just 5 more weeks to go. I would hate to get in line for the wrong plane...If that ever happens, I'll make sure that I let you know, so you can have a good laugh...Goldenlover be carefull and I'm glad that you have the solar cover on and your husband was there to help you.

    Leah_S- What part of Kauai does your Aunt live at? Who knows, maybe I know her :)

     I just have 2 more questions... What is Bolus? and have you ladies been having aches and pains too?

     Take care and have a wonderful week....

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  • Dawnmrn1
    Dawnmrn1 Member Posts: 446
    edited July 2009

    concierge- a bolus is a large, concetrated dose! What a journey you are on, a plane ride to rads, good luck, this too shall pass!  Have a great week!  DAWN

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  • DUTCHinAtlanta
    DUTCHinAtlanta Member Posts: 58
    edited July 2009

    NanaA - Have you tried Claritin for the bone ache?  Many folks, including my wife, swear by it for the bone pain caused by the Neulasta shot.  Not sure if it will do anything for you, but it might be worth a shot.

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  • MsDebS
    MsDebS Member Posts: 36
    edited July 2009

    Annette,

    I too am just on Herceptin now and have a lot of hip and lower back pain.  I also have developed a headache that just wont go away but dont know if that is from the Bonefos that I started taking for my study group.  Day 12 of rads.  Anything I complain about I am told is not from the rads....but I am fuzzy and also cranky. 

    Deb

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited July 2009

    NanaA - So sorry to hear you're having such a tough time. I also tended to wait to take painkillers until it was really bad, but have changed that. I was told that I should take it when the pain is starting and it wil be more effective, and I've found that it's true, even for killer migraines.

    concierge, my aunt lives in Kapaa. Boy would I love to be able to visit her but finances being what they are, it sure won't happen soon.

    The bolus is a silicon sheet put on the treatment area to bring the rads up to he skin and concentrate the treatment there. It's used after a mast since most recurrences are in the skin.

    Leah

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  • Ainm
    Ainm Member Posts: 781
    edited July 2009

    I finish rads tomorrw. I had 15 sessions (dose dense) with a bolus to the mastectomy scar every time.  My skin is quite pink and tight but as I don't have any feeling in that area I cannot say it is sore!!!  I swab the area in cold camomile tea twice a day and use industrial amounts of aqueous cream. The rad nurse is quite happy with the scar except for one small area near my arm which is breaking down slightly but this could be because this is the area they reopened to drain the wound when I got a post op staph infection.  I am quite tired and still have residual pain from taxol chemo which I finished six weeks ago.  Will see my onc today and he will be giving me my prescription for Tamoxifen so I'll have another 'new' thing to deal with now. Can't ever imagine having energy again!!!

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited July 2009

    Ainm, congratulations on finishing! Keep doing your skin care stuff , since the skin can still have reactions for up to two weeks after you finish. As I saw on another thread, it's still "cooking".

    Leah

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